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jenparis03

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Hi, I am new to this forum. My father is 52 years old and last Thursday was diagnosed with ALS. He has been experiencing symptoms for 18 months now, but they were treated by doctors as stress related. He is progressing very slowly which is a good sign for him and my family. I have been researching the best diet for him, but coming up very confused. Does anyone know of or have tried the Ketogenic diet? I can only find information dating back 2006. He is also overweight and wanting to shed that while he can still do light physical activity. Any information would be great! I have nominated myself his personal chef and I am trying to design the right plan for him. One nutritionist friend of mine has suggested the SouthBeach diet...please any suggestions! I want to slow the progression as much as I can with his diet and at the same time make him as healthy as possible while he can still chew and swallow. Also, lots of research on trying to eliminate as much MSG as possible...any suggestions?
 

Katie C

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I would speak with his neurologist before trying any kind of weight loss program with your dad... he will start dropping weight anyway soon enough and I have heard doctors tell even their overweight PALS to try to maintain weight rather than lose it.
 

sadiemae

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NO NO NO, DO NO LOOSE WEIGHT. Limit the MSG, but add high fat to his diet. Add a bit of butter or sour cream to everything. Get off any statins. A bad cholesterol is a GOOD things for PALS. New research has shown that bad cholesterol can add a yr to the life of a PALS. Also loosing weight means you are loosing muscle, and once muscle is lost you never get it back. My husband is 5ft 9 in, and weigh 205. That is his goal weight to keep. You will probably notice a big belly like he is pregnant. This is normal, as the muscles are breaking down. His primary doc at the VA always says he needs to loose weight, and I remind him he has ALS and loosing weight is a big NO NO. HUGS Lori
 

Katie C

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Lori.. I had to laugh... my son and I can slip 1/2 and 1/2 into just about anything.... our starbucks orders are always two nonfat (for me and Kev) and 1 "breve" for Glen. 1/2 and 1/2 or cream are the puree-liquids of choice. It makes sense.. fat is needed for nerve development, so hopefully it also has some protective qualities. Glen has always been uber-lean, with only 8 - 9% body fat... common for distance athletes. But that left him nothing to fall back on. He's now about 163 at 6' tall, and you are right.. most of that is in his belly. His upper arm circumference is down to 9"... not much bigger than my wrist.
 

ChrisQ

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I HAVE BULBAR ONSET ALS diagnosed last October 2009. When I had seen my primary care doctor for my annual check-up last JUNE, 2009 he put me on the South Beach diet. Thought it would be a good idea for me to drop a few pounds. Meanwhile I was referrred to a neurologist because I was experiencing "lack if tongue mobility" and a few falls I had. I was delighted because I lost weight but it turns out it was the ALS causing me to lose more than the diet itself. When my neurologist realized what I had been doing he said, "NO NO NO, DON'T LOSE ANY WEIGHT, EAT HIGH FATS". So, following doctor's orders I am eating any fatty thing I want.

Good luck,
chrisQ
 

sadiemae

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Isn't this forum great! Chris your doctor is spot on! HUGS Lori
 
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MickeyMouse

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My PALS went on a calorie-restricted diet for 3 weeks and lost 30 lbs..... and was definitely weaker afterward. (This was pre-diagnosis.) Drs. don't know why, but calorie-restriction = ALS progression.

Have some ice cream and forget South Beach.
 

jenparis03

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thanks for all of the input...obviously i am very new to this and still have more research to do. i guess our thought was that as muscles start to go the other muscles would have to work overtime to carry the weight...im sure if high fat foods is the best route, my dad is going to be very happy...any other information you have found helpful, please pass it on!
 
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